Lifelong Care: Building Your Spina Bifida Care Team

Spina bifida is a chronic condition that requires a lifelong partnership with a specialized medical team. Because it can affect many different systems in the body, care involves a multidisciplinary team—a group of specialists who coordinate their efforts to ensure optimal health. While the needs of a newborn are different from those of an adult, the goal remains the same: maximizing independence and preventing complications across the lifespan.

A Critical Safety Warning: Latex Allergy

Up to 70% of people with spina bifida develop severe, life-threatening latex allergies due to early and frequent exposure during surgeries and catheterizations ^[1]. It is absolutely critical to maintain a strict latex-free environment from birth to prevent this allergy from developing. This includes medical equipment, balloons, certain toys, and pacifiers.

The “Big Three” Specialties

Most medical care will revolve around three main areas: the brain and spine, the urinary and bowel systems, and the bones and joints.

1. Neurosurgery: Protecting the Nervous System

The neurosurgeon monitors the brain and spinal cord for potential issues that can arise at any age.

• Hydrocephalus and Shunts: Many individuals require a shunt (a small tube) to drain excess fluid from the brain ^[2]. Shunts can sometimes fail or become infected, which is a medical emergency requiring immediate attention ^[3]. Signs of a shunt malfunction or infection include severe headaches, persistent vomiting, lethargy, swelling along the shunt tract, or changes in vision ^[3].
• Tethered Cord Syndrome: As a child grows, the spinal cord should move freely within the spinal canal. In spina bifida, the cord can become “tethered” or stuck to the surrounding tissue ^[4]. This can cause a progressive loss of leg strength or changes in bladder control, and it may require surgery to “untether” the cord ^[5][6].
• Chiari II Malformation: This is a condition where the lower part of the brain is positioned lower than normal. While many have no symptoms, the team will monitor for issues like breathing difficulties or trouble swallowing ^[7][8].

2. Urology and Bowel Management

Protecting the kidneys and maintaining continence are major priorities. Most individuals with spina bifida have a neurogenic bladder and neurogenic bowel, meaning the nerves controlling these organs do not work properly ^[9].

• Bladder Monitoring: The urologist uses urodynamic testing to measure bladder pressure ^[10]. High pressure can cause urine to back up into the kidneys, potentially leading to permanent damage ^[9][11].
• Bladder Management: To keep pressures low and prevent infections, many families use Clean Intermittent Catheterization (CIC) to empty the bladder ^[9][12]. Medications like anticholinergics may also be used to help the bladder relax ^[13][14].
• Bowel Management: Neurogenic bowel can lead to severe constipation and incontinence, significantly impacting quality of life. Proactive bowel management programs are essential and may include dietary changes, daily enemas, or surgical options like the MACE (Malone Antegrade Continence Enema) procedure to achieve independence and confidence ^[9].

3. Orthopedics and Physical Medicine: Mobility

Challenges with bones and joints often occur due to muscle weakness and nerve involvement.

• Orthopedic Surgery: Specialists monitor for scoliosis (curvature of the spine), hip dislocation, and contractures (tightness in the joints) ^[15][16].
• Rehabilitation (PM&R): Physiatrists and therapists (Physical and Occupational) help with mobility aids like braces, walkers, or wheelchairs. They focus on strengthening and finding ways to perform daily tasks independently ^[17].

Transitioning to Adult Care

As children enter their teen years, the focus shifts toward the “transition” to adult medicine. This is a critical period because many pediatric hospitals do not treat adults.

• Structured Transition: The Spina Bifida Association (SBA) has developed specific guidelines to help families transfer care to adult specialists without losing the continuity of their treatment ^[18][19].
• Self-Management: A major goal of the transition is helping the young adult learn to manage their own health, such as performing their own catheterizations and recognizing signs of shunt failure ^[20].
• Adult Health Risks: Adults with spina bifida must remain vigilant about skin breakdown (pressure sores), which can affect up to 77% of adults annually and lead to serious infections ^[1]. Regular check-ups with a urologist and neurosurgeon remain necessary throughout adulthood to prevent long-term kidney or neurological decline ^[21].